Re-defining Family Centered Care for Youth with Special Health Care Needs

1. Re-defining Family Centered Care for Youth with Special Health Care Needs Ceci Shapland, MSN Consultant HRTW National Resource Center

2. What Does Health Got to Do with Transition? Everything!

3. HRTW Team Title V Leadership Toni Wall, Kathy Blomquist Medical Home & Trans Dr. Rich Antonelli Dr.Patience White Betty Presler Federal Policy Patti Hackett & Tom Gloss Family, Youth & CC Ceci Shapland & Trish Thomas Interagency Debbie Gilmer HRTW University Jon Nelson

4. HRTW website: www.hrtw.org

6. Health Impacts All Aspects of Life Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

7. Health Affects Everything!! • Employment • Housing • School • Community Living • Recreation

8. What is a successful transition? Youth are able to: • Access health services independently • Know about their health condition • Communicate their health care needs • Self-manage their care • Feel comfortable seeing the doctor alone

9. Goal of transition Improve the health-related quality of life of all young people with chronic illness or disability and enable them to reach their true potential.

10. Who are CYSHCN?? “Childrenand youth with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

11. CYSHCN 9.4 million (13%) <18www.cshcndata.org Title V CYSHCN:963,634 (0-18*) Virginia Title V: 7,303 (2003) SOURCE: Title V Block Grant FY 2006 Application * Most State Title V CSHCN Programs end at age 18

12. Good News!Celebrate! Over 90% of children with special health needs are living to adulthood and many are doing very well!!!!

13. Bad News!Areas to Improve • 45 % Lack access to physicians familiar with their health condition • 40 % Lack a payment source for needed health care SOURCE: 1997 survey of young adults served by the CHOICES Project of Shriners’ Hospital

14. Bad News!Areas to Improve Survey results continued: • 80% Lack referrals to adult health care providers • 40% Use emergency care in 1 yr compared to 25% in typical young adults

15. Federal Mandates Supreme Court decision - Olmstead (1999) Affirmed the right of individuals with disabilities to live in the community rather than in institutions whenever possible. Full integration - a reality for people with disabilities – means not only changing existing practices that favor institutionalization over community-based treatment, but also providing the affordable housing, transportation, and access to state and local government programs and activities that make community life possible.

16. Federal Mandates The President’s New Freedom Initiative (2001) Responsibility given to HRSA for developing and implementing a community-based service system

17. NFI: Delivering on the Promise p. III-39 HRSA's MCHB will take the lead in developing and implementing a plan to achieve appropriate community-based services systems for CYSHCN and their families. Barrier Addressed by Solution / Access to: 1. Comprehensive, family-centered care 2. Affordable insurance 3. Early and continuous screening for SHCN and 4. Transition services to adulthood

18. Surgeon General’s Call for ActionImprove the Health and Wellness of Personswith Disabilities2005 • People nationwide understand that persons with disabilities can lead long, healthy, productive lives, • 2. Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity

19. Surgeon General’s Call for ActionImprove the Health and Wellness of Personswith Disabilities2005 3. Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles 4. Accessible health care and support services promote independence for persons with disabilities.

20. State Title V CSHCN Block Grant National Performance Measures To help states develop effective mechanisms to achieve a system of care for all children with special health needs and their families by 2010, six national performance measures (NPM) will serve as a guide to states in meeting this goal. SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

21. CORE National Performance Measures 1. Screening 2. Family 3. Medical Home 4. Health Insurance 5. Community Services 6. Transition SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

22. Title V Block Grant: National Performance Measure #6 Transition to Adulthood Youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. (2002)

23. Transition & ……Screening

24. Health & ….Life-Span Secondary Disabilities -Prevention/Monitor - Mental Health, High Risk Behaviors Aging & Deterioration - Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments

25. Screen for Life Areas How does health affect: • Employment • Leisure, Recreation • Community: transportation, housing, activities • Higher Education or Training

26. Screen for All Health Needs • Hygiene • Nutrition (Stamina) • Exercise • Sexuality Issues • Mental Health • Routine (Immunizations, Blood-work, Vision, etc.)

27. Transition &…Youth & Family Participation

28. Health &…..Work (starts early) Home • Chores - Role in the family • Community Experiences School • Attendance (on time and wellness) • Real Skills for the real world Doctor’s Office • Health …… staying well for longer periods • Maximize: stamina, mobility, communication

29. Health &…..Work (starts early) • Aspirations & Expectations • Youth Involvement – Increasing overtime • Informed Decision Making – Voice heard • Possibilities – Opportunity to try

30. Transition Issues for Families Starting Early • At diagnosis • Sense of future Raising Expectations • Assisting in care • Talking with the doctor

31. Issues for Families: Letting Go Launching Adults • Practice, practice, practice • Supports-health surrogate • Guardianship, conservatorship

32. Issues for Families: Be Creative Creative problem-solving • Define concerns • Include child/youth in discussion Age of consent-a surprise! Portable Health Summary

33. Changing Roles-Becoming a Coach What does that mean? Youth are creative, resourceful and whole! New skills-listening(3 levels), open ended questions, changing perspective

34. Nurturing Independence For all youth: • Do not solve all the problems, arguments, fights, etc. • Teach negotiation skills

35. Challenge for Parents • How to support health of their youth and the need for growing autonomy • Negotiate and compromise regularly!

36. Steps to Promote Transition • Talk with youth about views on how much control over health • Provide opportunities to state feelings and be respected • Teach health care skills at an early age • Develop health care routines

37. Steps (cont.) • Learn more about youth development • Provide positive feedback • Notice language-”we” • Promote age appropriate health care • Practice decision making and problem solving skills

38. New Brain Research Use it or lose it! Practice, practice, practice

39. Steps (cont.) • Provide opportunity for youth to co-sign treatment and surgery forms. • Assist in the development or identify a peer group. • Take time to learn why youth is not following a treatment plan • Provide opportunities to make mistakes

40. Steps (cont.) • Research and provide information on resources and supports for living health and more independently. • Promote a partnership with the doctor and youth.

41. Collaborative Partnership Goals: • Youth defines his/her concerns • Youth and doctor agree on health goals • Health care skills and understanding are taught and supported • A follow-up plan for staying healthy is identified.

42. Issues for Youth: Healthy & Informed Informed decision-making • Teach about special health needs, possible changes, emergency plans • Learn about general health • Use resources to support learning-school and IEP

43. Issues for Youth: Adult Systems • Health Care Insurance Family plan, Medicaid, new employee plan-aging out-what are the rules? • Adult care-a different culture • Identifying and planning the transition to adult care doctor

44. TRANSITION TEAM:The Players Youth Community Resources Family Health Professionals

45. Youth Centric Health Care • Youth, family & physician work together to plan for youth to be in charge of his own health (youth is the constant in his/her own life) • Youthis the team leader(collaboration and partnership in care)

46. Youth Centric Health Care • Youthhas knowledge of condition(sharing unbiased and complete info) • Youthmakes decisions on health care • Physicians speak to youth PRIVATELY(meets developmental needs)

47. Youth CentricHealth Care • Design a flexible, accessible, responsive “Youth friendly” atmosphere(Accessibility- physical, appointment times, etc.) • Promote youth to youth mentoring and support(consumer to consumer support)

48. Mentoring • Important strategy in a positive transition • Peer mentoring-better adherence to health care regimen • Enhances physical and mental health

49. Youth are Talking: Are We Listening? Experiences that were most important: • learning to stay healthy • getting health insurance SOURCE: National Youth Leadership Network Survey-2001, 300 youth leaders disabilities

50. Youth are Talking: Health Concerns Survey of 1300 YOUTH with SHCN and disabilities Main concerns for health: • what to do in an emergency, • how to get health insurance, • what could happen if condition gets worse. SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995